Ken - Yeah the adrenaline type reaction also makes me wonder what the trigger there is. Like if I do an activity with sprints or short term high exertion when I stop movement I often have a rush of stinging from head to toe...not sure what causes this but could be temperature or adrenaline. Good to know I am not the only one with fluctuating symptoms.

DejaVu – I feel very fortunate because I know that my symptoms do not compare to many people’s on this forum but answers would still be nice as I am only 22 (symptoms started at 19). Good to hear the sodium channel testing might give answers but I also was only tested for 1/3 so we will see. Did you get tested for one or several? I should have the results this week so can post what the results are when I know.

One last thing – I have experienced deep almost like bone pain in one leg a few times. No idea what is causing it but that one is very painful and makes it hard to sleep – could this be neuropathy related or something else?


Thank you guys for all your responses